Sunday, May 3, 2009

Luisa, undiagnosed bio

I would like to begin by letting everyone that participates in this site know how much they are actually doing for people. I don't see how I could have made it through the last several months without this site. I am 27, and have recently been diagnosed with Cushing's. What type I am unsure as of yet, but should have more answers in a few weeks.

As many of the women here, I have been plauged by a group of symptoms that has gotten progressively worse and worse. After dozens of trips to the doctor for what was seemingly unrelated instances, I finally began researching my problems as a whole. I began this part of the quest in early February when I (with my extremely supportive mother) sat down with my PCP and told him I needed help. The weight, skin problems, purple stretch marks, excess hair where it shouldn't be and not enough where it should....the list is very similar to many others here. In addition, the burden of trying to manage all of this with the emotional repercussions was growing too much for me to handle.

My doctor was understanding, and said he thought I had PCOS. Having been on birth control pills continuously for almost ten years, I had no idea whether my cycle was actually normal or not. He immediately wrote me a prescription for Aldactone, said we would consider Metformin the next visit depending on my labs, and sent me for blood work and an ovarian ultrasound.

I left the office feeling as if a weight had been lifted off of me. There was hope for me yet, and for all of my terrible symptoms that for so many years the medical profession had been attributing to me letting myself go, or just getting older. After several weeks, with the blood work and ultrasound complete, I received a call from my doctor. All of my labs were normal. In fact, my testosterone, which we all expected to be through the roof, was actually a little low. The ultrasound showed not even a trace of an ovarian cyst, perfectly normal.

At this point I began to question my sanity. How could I have hair growing in the places it was growing with low testosterone?!?! Needless to say, my doctor said he suspected that I had some sort of adrenal disorder, not PCOS, and referred me to an endo. After this phone call, I googled : Adrenal disorder misdiagnosed PCOS. Here is where I ended up, and turns out that three months of doctor visits have confirmed that I am indeed in the right place.

The first physical exam was exciting (to be getting somewhere) and just as embarassing. Waiting for my initial bloodwork was agony, although I knew what it would show. I knew the course of tests that would follow, and have been dead on so far. My plasma cortisol at 10 am was through the roof....then we moved on to the 24-hour Urinary Free Cortisol Test....which again was through the roof. We followed up with the midnight salivary test, which fell right in line as abnormally high.

This coming Wednesday, I will complete the Overnight Dexamethasone Supression Test. I am anxious, terrified, and excited. I am so hopeful that there is a possibility I may get my life back. I wish my life had a fast forward button....I don't want to live this life anymore, I want my life back. I used to be beautiful, happy, and confident. Now I just want to live in a cave and never have to interact with another person.

In the midst of all of this, my fiancee cheated on me. Talk about kicking someone while they're down....I have learned a valueable lesson; Just when you think it can't get any worse, it can, and it does. I certainly don't mean to emphasize the negative, but sometimes it's too much to handle. I am so very thankful for all of the selfless and wonderful people involved in this site that have told their stories. I honestly don't think I could make it through a day without this site, it, along with the best mom in the world have been my rocks, and I can't express my gratitude enough.

To those who may read this, there is hope for you, and there is hope for me too. The process of diagnoses is painfully slow, and the thought of dealing with your symptoms for any longer is miserable, I know. But, lets rely on each others stories and experiences for support. I will update as I learn more, and anyone please feel free to contact me, and thanks again to everyone.

Email Luisa

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